In July 2009, our beautiful son Adam was diagnosed with high-risk neuroblastoma, an aggressive children's cancer. Despite four years of treatment in the UK, Germany, and America, Adam sadly passed away on 11th July 2013 at home with his family. Visit Adam's Appeal at http://adamsappeal.org.

Friday, 20 May 2011

Even. Less. Clear ...

Well what do you know? Adam's Gallium Octreotide scan was largely negative. Just a small area of uptake in the right femur that doesn't even correlate precisely with what is seen on his mIBG scan. What does it mean? Well it means that the neuroblastoma cells in Adam's body do not, in the main, take up octreotide. What does that mean? It means just that. Nothing more, nothing less. It barely moves us forward at all. I guess the fact that there were no new areas of uptake distinct from those that exhibit mIBG avidity is a good thing. But it's official, I am now pronouncing it so. Adam is an enigma. The truth, of course, is that neuroblastoma is such a complex, multi-dimensional disease that there are children like Adam for whom modern medicine just doesn't have any answers at present. Relatively speaking there is so much that is still unknown about what neuroblastoma really is, and how/why it behaves like it does.

With these results the 'plan' has an additional, hitherto unmentioned, element; an MRI scan. He's had pretty much every other scan and diagnostic test going, I'm sure he'll hardly noticed if we slip one more into the schedule. The idea is that the MRI scan will focus on the area of the right hip and femur where there is concentration on the octreotide scan and positivity on the mIBG scan too. Essentially it will be looking for viable areas to biopsy, without which we cannot enrol on the American hu14.18 antibody trial.

It's fair to say that the latest scan results make it much more likely that we will not be taking Adam to the States. Not because we don't want to, or because we don't think it would be beneficial. We simply will not be able to. Even if the MRI, which is unlikely to change the picture dramatically, doesn't close the door to biopsy completely there is still a reasonable chance that any sample that is taken won't contain viable, active, disease. No active disease means no trial.

In that case we'd be off to Germany, yes? Well I guess so, although part of me is instinctively resistant to doing something if it is the easiest, or obvious, option. That's not the criteria on which decisions as critical as this need to be made. By the same token overlooking the right option just because it's also the easiest and obvious would be even more dumb. *Sigh*

Whilst we continue to try and figure out what to do for the best, I couldn't sit idly by and have Adam on no active treatment whatsoever. So we've agreed with his doctors that he will start cis-retinoic acid. This consolidation therapy to treat minimal residual disease (as is high-dose/transplant and immunotherapy itself) is designed to induce maturation of neuroblastoma cells rendering them benign. The treatment schedule is two weeks on, during which Adam will be taking 6 capsules (to make up the required 75mg dosage) twice a day, and then two weeks break. A piece of cake to a veteran pill-taker like Adam - he takes them like other kids take smarties. There are not many parents like us who can say they are proud of their son for being a pill-popper! Like everything else cis-retinoic acid (essentially massively high doses of Vitamin A) doesn't come without side-effects. The most obvious and common is severe dryness of the skin, especially face, eyes, and lips, which can become extremely painful and sore. We've already stocked up on copious amounts of Vitamin E cream in preparation. There are other, more severe, side-effects, but these are rare; and Adam's blood results will be regularly monitored for any liver abnormalities. There is also an ongoing debate about possible long-term side-effects ...

One final thing that is definitely worth mentioning, and that to my discredit I could easily have omitted. The Royal Marsden have been incredibly supportive of what we are trying to do in terms of getting the absolute best treatment for Adam. At various points over the last few weeks and months the simplest option by far would've been to turn round and 'encourage' us to take Adam to Germany for the ch14.8 + IL2 trial. Instead they have remained very active, talking to doctors in other countries, facilitating the various additional scans. My feeling is very much that at the end of this period we will know as much as we ever could about what is going on inside Adam. The unfortunate thing is despite everything we have done, and are doing, there's still not actually very much we can say for sure, and the future remains as uncertain as ever. Of course there have been times when I haven't been completely happy; I was very frustrated over the amount of time it took to get the PET and Octreotide scans organised. I've challenged the doctors, offered opinions, made suggestions, and asked some difficult questions (plus a fair few stupid ones as well). And at no time have I heard discouraging noises, or felt like I was being talked down to, or told what to do. It's a very welcome contrast to some of the stories that I've heard from other parents across the UK. Maybe I've just been lucky, maybe sometimes I see through rose-tinted spectacles, or maybe the times they are a-changin'.